Update #24 from Jim
I realize by the number of responses I received that I left things hanging
in my last update. Let me tie together some loose threads and catch you
up.
August 23-29:
While those of us,
enjoying reasonably good health found time to complain about such things
as cat hair on the stairway or money that seems never to stretch far
enough, Janice remained hooked up to a variety of IV bags and temporary
urine catheter, requirements for her post-operative tummy [see update
#21). In the week following surgery, she made real and gradual
improvement.
Each day gradually brought new levels of mobility, in spite of the drastic
shock of emergency surgery on August 21. Before long, I was following
Janice’s lead, supporting her and avoiding any collision with her
entourage of IV’s on wheels, swaying bags and pulsing pumps, while her
mother, Bobbie, pushed the poll housing all this paraphernalia. Each of us
was required to remain sterile, so our bodies were wrapped in yellow paper
gowns, hands encased in latex gloves, and Janice’s mouth and nose was
adorned with a face mask. Janice’s walk seemed more like a comical parade.
Only, there is no comedy in beneficial efforts of recovery, I’ve
discovered. The serious point of this daily exercise was movement that
would prevent pneumonia brought on by long term lack of mobility.
Each day of this week,
Bobbie’s and my first cup of coffee was poured before sunrise. Sip; slip
to the car, drive downtown to Vanderbilt, and be in Janice’s room before
morning doctor’s rounds. I wanted a first-hand, first-thing report. Then,
I drove back to the office while Bobbie spent the day with her daughter.
Around 5pm, I returned to sit with Janice for a couple of hours before
Bobbie and I drove home, set up the next morning’s coffee, checked emails
and fed the very confused pets and prepared to repeat our routine the next
day..
On Monday, I took a desktop CD player to Janice’s room so she could listen
to all the hymns that artist friends had recorded for her. Thank you to
all who did this; she was both comforted and encouraged by each musical
expression of faith. The nurses and doctors could not believe all the
original CDs she had from artists - it was quite a point of discussion.
Also, we gave copies of Janice’s books to the many nurses, doctors, and
CP’s (care partners) who so lovely cared for my wife throughout the 4-week
ordeal, and by this point in her hospitalization seemed more like friends
then professional caregivers. (Unabashedly proud plug for my wife’s fine
work: If you want to know more about her books and CD’s, please visit her
website
www.janicechaffee.com).
One exercise walk around
the ward became one and a half, then two. No food became actual bites (ok,
mostly red Jell-O and chicken broth, but it entered her mouth via a spoon
rather than her veins via a tube), IV meds were replaced by pills,
troubled jerky sleep became actual rest, by Saturday the 28th
the hospital staff began preparing Janice for home. She was unplugged,
unconnected, unwired, unmonitored. Her mom and I began the work of boxing
up everything that had accumulated in her room since August 6th.
Sunday morning, after attending early church service, the time had come
for my beautiful bride to come home.
No matter how ready we all were, first we had to listen to about an hour
of instructions: take these pills once each day, these twice, etc., here’s
what she can eat, here is what is off limits, if her temperature rises
over 100.5, if she breaks out in a rash, if you can’t control her
vomiting, etc., etc., etc., call us immediately. Then with the aid of a
volunteer who brought a wheel chair and cart for transporting goods, we
were off.
Upon arriving home, we
had hardly closed the front door when the efficient home-care people
dropped off TPN’s (intravenous feeding bags) for the next week, a box of
plastic tubes, saline flushes, a pump, a portable IV stand and everything
else I needed to make sure Janice received enough nutrients while she
works herself up to the oral intake of 1000 calories a day. Shortly after
they left, thank goodness, a home care nurse arrived to teach me how to
connect everything. By this point, I would be less then honest, if I did
say I wasn’t a touch panicked about keeping all of this new found medical
responsibility straight.
Monday, Janice was very weak but able to choke down her medication, sip
some broth,
and sit up in her chair most of the day. Monday night kicked our progress
in the hiney. It started again: vomiting, diarrhea, disorientation, off,
on, all night; mostly on. The next morning as she prepared to leave for
her doctor’s appointment she asked, “If they will let me, can I go back
into the hospital for a couple of days?”
“Yes, of course,” I said. How well she knew the state of things. How
terribly I wished they were different.
An hour later Bobbie called from the Stem Cell clinic to say they were
putting her back in the hospital. They thought they had released her too
soon, before she could keep food and medicine down. Now, they were
concerned that she was experiencing withdrawal from the heavy doses of
morphine. So back to the hospital it was, same ward, different room, after
three weeks, we knew the routine.
August 31-September 12th:
Over the next 5 days Janice was slowly backed off all pain medicines.
Once again she was carefully watched as they transferred her medication to
pill form, and begin to feed her more solid foods (Right, “solid” red
Jell-O and chicken broth).
On Saturday, the 4th,
Bobbie flew back to Alaska. I spent that evening doing laundry, making
the bed, and preparing once again for my wife’s Sunday afternoon
homecoming.
The next week was filled with work. I hitched up Janice’s IV’s in the
evening, loving friends provided daily trips to the doctor: Tuesday:
check up; Wednesday: surgery staples removed; Thursday: blood work and
finally, a report. Progress on the stem cell transplant is good. Her
transplant has grafted, her blood counts are normal. Now it is just slow
daily progress to be able to eat real food (Not Jell-0 and chicken broth).
Most of you know that I do all the cooking at the Chaffee house and it is
not only my job, it is what a friend of ours calls, a freewheeling,
mouthwatering, masculine art form. I can hardly wait for the day when I
can cook a real meal for my wife again, one she can actually taste and
swallow.
Each day, I rejoice when there is enough progress to allow me to notice
cat hair on the stair. True progress is measured in small
accomplishments, but it is still progress. One bite of soup increases to
three, which increases to a small cup of soup. Saturday, September 11th,
I made a real breakfast: bacon, eggs, hash brown potatoes, toast, and
juice. She managed to eat a few bites of bacon, some egg, a little hash
brown and a bite of toast. Progress. Sunday, she was able to go to church
and, after church, for an awe inspiring trip to Costco.
During church, I found
myself very emotional. My wife was sitting next to me; NEXT TO ME! The
joy of it, the truth of it nearly undid me. When I think back on the past
month, I must admit that I sometimes wondered if that would ever happen
again. Sitting in the sanctuary with her overwhelmed me. Her very real
presence and the very presence of God was there and I was reminded that He
had been with us throughout the entire ordeal.
Tuesday, September 14th, Janice had another bone aspiration to
check for cancer counts. It is amazing what becomes ordinary. Bone
aspirations, once a foreign language, have become routine. On Friday, the
18th,
we heard the great news “Negative, Negative” - translated, that means,
hardly any detectable cancer cells are in her marrow. That is such great
news!
It feels like we are
clearing our first main hurdle without knocking it down or stumbling.
Still, we can see a number of them ahead of us before the finish line. The
next hurdle is called “find a donor;” after that, full body radiation;
then more chemo; finally the biggest hurdle of all, bone marrow
transplant. So much done, so much yet to do.
Before I close, there is one of those “to do” things I want to do right
now. I wanted to pay tribute to our mothers. Ann Taylor, in her poem,
My Mother, from her collection
Original Poems for Infant Minds
(1804), wrote:
Who ran to help me when I fell,
And would some story tell,
Or kiss the place to make it well?
My mother.
One
of the great things Janice and I have discovered in these last month is
that the words of this poem apply no matter one’s age. Both my mom,
Sharon, and Janice’s, Bobbie, dropped everything they were doing, flew to
be at our side. They cooked, cleaned, drove, held us, wept with us and for
us, and for the first time in over 30 years we experienced the loving
warmth and security in the presences of our mothers. During the six weeks
my mom was at our house I was struck over and over again by the
incredible privilege of spending that much time with her after all these
years and the same applies to the time we both had with Bobbie.
All of that to say, thanks moms; Then, forgive me for a little lesson, for
those of you reading this (whose mothers are still alive), don’t ever take
your mothers for granted; at some point you may need what they have always
been willing to provide.
Thanks as always for your continued prayers,
Jim
P.S. A reminder about the bone marrow drive for Janice and Julian, this
Saturday, October 2nd
at the Red Cross Building on Charlotte Avenue at 22nd Avenue.
The drive begins at 7:00 a.m. and ends at 4:00 p.m. Janice and I will be
there most of the day and would love to see you. If you live out of town
you can still donate, for more specific information, go to the National
Marrow Donor Program (NMDP) web site:
http://www.marrow.org.
Or call Linda Hilton at 1-866-680-0137.
P.P.S. We are in the process of combining both of our email lists to make
it easier to keep our information clean. If you want to write Janice back
directly please do so at
janice.chaffee@janicechaffeeonline.com, and please
change her email address in your data base.
Thanks j
"All
material, unless otherwise noted, are owned and copyrighted by Janice
Chaffee and James Chaffee, © 2004, 2005, 2006. Permission is granted to
forward e-mails, or print for personal use only. No portion of these
updates may be quoted in part or whole in any published material or on
any internet site without authorization from authors.”
